When they prepare you for RAI, they tell you, “There’s not really any side effects from the medication. Oh, you will need to be isolated from other people for like four days. Well maybe a week just to be safe. You might want to think about getting some lemon drops, too. Not the sugary kind, but the good and sour kind. The doctor will probably want you to have them. Why? Just to protect your salivary glands. Some people get a little dry mouth because the RAI affects those, too. There’s no pain but you can take ibuprofen if you need to. You can eat anything you want after 24 hours! Any questions?”
LIES. THEY ARE ALL. LIES.
Okay not really. But they may as well be.
It’s true, the medication ITSELF does not really have any adverse effects though some people can get nauseated. If you’re prone to getting sick from meds, or already feeling queasy, ask for some anti-nausea medicine. But seriously, probably the most irritating thing was not being told any specific instructions about my isolation until THE DAY OF. I looked almost everything up online, most of it was accurate, thank the gods, and I over-prepared rather than under-prepared (I had an extra human being in the house to help–THANK YOU DADDEO!!), but I really did not know how long I’d have to go without touching anyone. Or how much longer I’d be on the low-iodine diet. Or that I couldn’t make food for anyone else during that time. So, leaking radiation is a pretty important side effect they should really prepare you for at least a couple of days ahead of time so you can make plans! I, for instance, work. I am a nurse. This means I have to touch people. I am grateful I could take the time off of work for treatment, but what about people who don’t have the vacation time, or have to give so much notice so they don’t get in trouble with their employer? I am fortunate to have amazing supervisors and that I work for an extremely compassionate company, but that is not true for all people who work.
The lemon drops are a thing. That’s not a total lie either. It’s amazing how many they want you to eat, though–2 to 3 EVERY HOUR for two days while you are awake. Oh, and if you wake up in the middle of the night to pee? Go ahead and pop another one. Good gravy make sure you brush your teeth because all that sugar really makes them feel gross, let alone the damage it’s doing to the enamel. The RAI does affect your salivary glands, and the sour drops do help–except in my case, where I have ZERO issues with dry mouth. HUZZAH! I stopped taking them after about 5 hours because I couldn’t take it anymore. Now, that is MY story–if your doctor wants you to take the lemon drops, DO IT. Do not stop taking them without consulting your physician. What I did was a bad thing, not a case study for why it’s OK for you to be non-compliant. TAKE YOUR LEMON DROPS. They are tasty. But yay, no dry mouth!
The other thing? About no side effects?
I can’t taste a thing. Oh, no, it’s not that I have a metallic taste in my mouth, which was a possible effect I read, again, online. It’s not cottony. It’s not “altered.” It’s GONE. My taste buds are fried. Normally anything above “mild” and I’m reaching for bread and milk to make the pain stop. My mother who can eat habenero pepper anything? I got a southwest style wrap at a deli. I gave her the leftovers. I told her it was pretty tasty. “Whoa–this has quite a bite to it!” … “…What? I thought it was good but it’s not hot…” “Yes, yes it is.”
Now that’s kind of cool. Suddenly I can tolerate spicy food.
Except I can’t taste anything else.
Strawberries? Chewy water. Pizza? My most favorite food in the world? Old cardboard. Ice cream? OK most ice cream is still fine. Because ice cream. Biscuits? Buttery old cardboard. Freeze dried apples, which I loved while on low-iodine diet? Crunchy aerated cardboard. Salsa? Chunky water.
Ironically, I’m eating MORE because I’m seeking flavor. “If I keep eating this terrible tasting thing I know is delicious, eventually it’ll become delicious again, right? That’s how this works?” NO BRAIN. THAT IS DECIDEDLY NOT HOW IT WORKS. And I have a pouch the size of an egg for a stomach. I CAN’T ACTUALLY EAT MORE WITHOUT PUKING.
There is no good follow up comment to that. Use your imagination. Or don’t, your call.